Thank you to everyone for all of your messages of support and prayers over the last few days for Emma and our family. This support is what keeps us going during the times that are tough. The initial news that we received from Emma’s scans on Wednesday was not what we had hoped for. We both felt very disheartened and discouraged by the news that they felt the tumor had grown and that we would again have to make a huge decision on what chemotherapy treatment to move onto. Needless to say, we’ve had a few rough days and haven’t slept much. The weight of this news after fighting so hard the last few months to gain Emma’s skills back after surgery was not what we needed to hear, and the thought of having to decide what to do next was again overwhelming.
When we left clinic on Wednesday, Dr. Chi said her plan was to have Emma’s scans reviewed at tumor board on Thursday and then she would contact us to let us know what was discussed, but we should begin considering which plan we would want to move forward with. We didn’t hear anything on Thursday from any doctors, which only makes you worry more. However, we were able to get out and go to the Children’s Museum in Boston with the kids and my cousin John and his wife Carol, who went along with us to Boston. Although we weren’t in the best of moods, we enjoyed the time together and the kids had a fun day.
We finally received a call from Dr. Goumnerova, our neurosurgeon in Boston, Friday afternoon as we were waiting to get on our last flight home. Thankfully, she had a little better news for us. She said that they discussed Emma’s scans at great length on Thursday trying to determine how much growth there was, and if was significant enough to warrant changing treatment plans. Dr. G. explained to us that this was a little more complicated comparison of scans than usual because Emma’s most recent scans had been done in an interoperative MRI scan during her surgery in August. Evidently they use a different strength of magnet in the interoperative MRI machine than they do regular MRI scans, which causes a difference in the images. This makes her scans more difficult to compare. She also explained that she felt that due to the great amount of pressure that Emma had experienced before the surgery from the tumor and excess fluid that this may have impacted that appearance of the tumor on the interoperative MRI. Dr. G said they even called in the head radiologist to help them try and determine if the tumor had grown as much as they had thought, or if they differences in tumor size could be caused by the issues we just mentioned. She also went on to explain that the Vinblastin treatment that Emma is currently on has a history of showing more stability and improvement after the initial three month scan.
After all of those discussions the tumor boards decision is that they feel the tumor has not grown as much as the initial radiology report indicated due to all of these different factors. Their recommendation at this time is to continue with the treatment we are on for another three months and scan again. At that time they will better be able to determine if the treatment is working.
Dr. Chi, also called us Friday afternoon as we were boarding the plane in Minneapolis to fly back to Omaha. She also discussed what Dr. G. had told us. She is more cautious and said she feels that the growth of the tumor may be more than tumor board is able to definitively determine at this time. But because we can’t determine for sure at this time if the tumor has grown or if it is differences in imaging that caused the tumor to look bigger, she thinks it is best to continue with this treatment because we don’t want to discard a treatment that could work too soon. She said we need to be cognizant of using too many treatments too soon, if at all possible. She also said we need to prepare ourselves that if the tumor really has grown and the treatment is not working well that the next scans could not be very good.
The last few days have been a roller coaster of emotions. While we were very relieved to hear the tumor boards decision and are so incredibly thankful that God has heard our prayers and is allowing Emma to move forward with this treatment, we are still very cautious. This news is better than we initially thought, but we have to remember that the it took some of the best doctors out there working together to make this decision and it still was not a clear cut decision.
We also learned this week from the genetic testing done on Emma’s tumor following the second surgery that she has a B-RAF duplication. The B-RAF protein is involved in sending signals in cells that cause cell growth. Research has shown that mutated B-RAF protein cells are often present in pediatric pilocytic astrocytomas. Emma doesn’t have the mutated, but they have found B-RAF duplication. This information will open the door to more targeted chemotherapy protocols that could possibly be developed. It was explained to us that regular chemotherapy treatments are like burning down a whole forest of trees to kill one sick tree, where the new targeted chemotherapy treatments go in with a chainsaw to kill only the sick tree. Research dollars have allowed doctors to develop targeted drug regimens that could help kids like Emma, however at this time drug companies have yet to be convinced that there is enough financial incentive for the drug company to develop this regimen. This information only furthers our resolve to continue to raise awareness and funding for treatments so that these targeted treatment therapies can be developed and used to help treat kids like Emma. We must keep fighting so that we can find a cure for this horrible disease.
Thank you for you patience with us this week as we worked through all of the information being given to us. We are cautiously relieved that the news is better than we initially thought, and are happy that we can continue with this chemotherapy plan. We thank you all for all of your continued support and prayers. We couldn’t do this without the support you give us. Together we can and will find a cure. EmmaStrong!!
Please take a moment this week to think of and pray for the family of Henry Seretta as he lost his battle with Leukemia and other health concerns Saturday morning. Emma, Brent and Haley had the opportunity to meet this amazing family on Monday before leaving for Boston at Childrens Hospital. We wish we had something that we could do to relieve their pain and loss but in the meantime we will be sending up prayers for all of those dealing with the loss of yet another young child.